Thursday, October 28, 2010

Reality Check

Ducks in a row! Who am I kidding? Reality check.....let's face it, my ducks haven't been in a row for a very long time. It started when we lost our first of five pregnancies. Then it was the twins.......then the news of Mia......then the recession. I must face reality. This list will continue to expand and I will have no ducks!!!!!!

As a small business owner during a horrible recession, Dave is struggling. We have tried to make do but the time has come for me to help. I will be starting a part time job in another week. My stomach is in knots and I have immense anxiety about leaving Mia. I hated leaving all my kids when I returned to work but this is even harder. I can't explain it and maybe I don't have to.

She has come so far and I just fear life will become too crazy to give her what she needs. We will be giving up her Early Intervention class at Mary Cariola, which has been so good for her, story time and together time! The girls will be seperated even more and even before the whole school thing!

Will I be out of touch with her therapies? Who will take her to her appointments? Who will monitor her eyes, her shakey right hand, her funny bump on the back of her head? How can I leave her when she is so close to walking? The list goes on. She has been my job. Her and her brother and sisters.

The problem is I have a difficult time not being in charge. I don't want anyone else to do those things for her. I am selfish and a bit of a control freak! I am very blessed to have wonderful friends and family who will help us figure all of this out. Most importantly, we have Daystar!!!! I breathe easier when she is there and I know they will monitor her and take such good care of her. They will practice her walking, read her books, sing her songs and love her. I cannot say enough about how absolutely wonderful they are there! What more can I ask for?

For now I will take it day by day and things will work out, they always do....maybe not how I planned them....but they do.

Tuesday, October 5, 2010

What's Next?

Mia with Uncle Curtis

Believe it or not, the next thing on our list is preschool! OMG, I cannot believe this myself!!! The girls are going to be two and you're probably thinking it is too early to be thinking about this but it really isn't. We have many questions and much investigating to do. Registration for Fall 2011 usually begins around February and, for anyone who knows me, I must have all my ducks in a row by then.

Because the girls have late fall birthdays, the original plan was to send them to preschool when they were 3 turning 4 (2012). However, as God continues to remind me that I am not in control, we have learned that Mia will have to enter Kindergarten in the Fall of 2013. If she does not enter kindergarten at that time, then she will have a gap in services. We, of course, do not want to lose services for any amount of time. We still could hold her off but I would rather she have two years of preschool before she starts kindergarten. In addition, she will age out of Daystar when she turns three.

If you've followed me so far, I may lose you now. Currently, our older kids attend a Catholic School. I am not sure how accommodating they will be for Mia and/or if they can even meet her needs. If not, our dilemmas are: Do we keep the twins together?; Do we put Mia in the public system by herself with all three of her other siblings going to Catholic schools? This would mean she would ride a separate bus (which she may anyway).; Do we pull the older kids out of the school they are in to keep all the kids together?.

My heart aches to think of Mia fending for herself without the support of her siblings. As Dave has said, "Of all the kids, she would need her brother and sisters the most." It also saddens me to have to separate the twins. They are finally starting to really bond and look for each other regularly now. Is it fair to always keep the girls together for the sake of Mia? Maybe they would prefer it that way. Maybe not. Maybe Mia's sister would resent that.

There are no answers, just a lot of unknowns and decisions we have make and pray they are the right ones. It is a year away. We do not know what Mia will look like in a year but we do know that she will, at the very least, need a 1:1 aide, OT and PT services. Currently, she is about six months behind in her receptive language which isn't bad. If she continues to progress in her language, she may or may not need speech. However, this year is a crucial one in language growth and we may begin to see more gaps. Then, again, she has proven everyone wrong over and over again.
When we think about how far Mia has come. It is nothing short of miraculous! First she was not suppose to survive my pregnancy, then she was not suppose to leave the hospital, then she was suppose to be profoundly physically and cognitively impacted. This little girl has fought so hard in her short two years. Nothing has been easy but she rarely complains. Her personality is angelic, her smile contagious. She lights up a room and steals your heart. As her parents, like with all our kids, we just want to protect her from the cruel harsh world.....from a life of struggle. Unfortunately, she may always struggle and we will have no control over some of it. For now, we will try our best to give her every opportunity and chance at success that we can.

This school thing is killing me! How can we do the right thing for her, for all the kids and yet not desert her? Maybe I'm being overly dramatic, I have my mother to blame for that (who told us last night she cried during every Incredible Hulk episode). I try to mostly focus on the positive with Mia....all she has overcome and accomplished. But, of all things, school for Mia scares me the most!!!! It is our first big decision that has a profound impact on her growth and development academically, socially, emotionally and personally. We will try to get it right the first time!